My little family is reaching out in hopes you would kindly consider helping us during this urgent and difficult time.
Carson is your almost typical 7 year old. He loves to play baseball, video games, make up silly song, make people laugh, and spend time with his sister. The unusual thing is Carson won the 1 in 110 lottery for children born with congenital heart defects. To take it a step further he is 1 in 10,000 whom are born with sever heart defects.
Alison is his amazing sister and is an human overall. She is 6 years old and loves to play with her dolls and barbies, she is incredibly creative and loves animals so much she wants to be a vet when she grows up.
I am Rheanna, Carson and Alison's mom. While pregnant with Carson I learned he had heart defects that would require open-heart surgery. Born a fighter he faced his first open heart surgery at just 3 days old.
Eventually I learned lots of the cardiac and medical jargon and how to advocate. His second surgery came at a surprise at just 5 months old as his cardiac team at Children's Hospital Los Angeles (CHLA) planned for his next surgery to be at about a year old. Carson's heart function declined after his second open heart surgery and we just waited.
At a little over a year old his heart function improved and CHLA felt it was time for surgery, this time to give his heart normal circulation.
[Carson was born with aortic atresia and a large VSD. In English this means his aorta was too small; this is the candy cane shape vessel that carries oxygen rich blood to the body, and VSD means that his oxygen rich and oxygen poor blood was mixing. His first two surgeries repaired his aorta, but he was too small to address the VSD.]
He went for a pre-op cath and it was determined that he was not a candidate for the planned surgery which would "patch" the VSD (hole), so I sent for a second opinion to Boston Children's Hospital (BCH). BCH said he was a candidate for the surgery that would restore normal circulation and at just over a year in a half old we went to Boston for his 3rd open heart surgery, this was in October of 2013.
In July this year we went to the cardiologist here at CHLA and were told that everything in his heart looked the same and an appointment was made for 4 months later. This has been typical since we got back from Boston in November, 2013.
His most recent file was sent to his cardiac team at BCH, this is also typical. This time they reached back out, and my heart sunk. They said it is time for intervention. He has outgrown the repair and needs to be seen. They first scheduled surgery for September, we were supposed to leave the 19th, but insurance has changed our plans. The claim has been passed around from one insurance group to the other and everyone is denying responsibility, because of this his surgery date has been pushed to November.
This gives me more time to prepare, and fight. I have been making endless calls and been in touch with Boston all along the way. Our case manager said "I wish all parent's were like you." I will do what is necessary to provide the care both my children need and am confident insurance will approve his claims.
My son's heart is a work of art and his artists are in Boston. I am going to do what it takes to get him there but I cannot do it alone. We need help with the financial load that this all bares.
I thank you for reading this far, and for investing your compassion into my family. If you would like to follow Carson's Journey I created a Facebook page for him called Carson's Heart Journey, I haven't posted often but when surgery comes I will post updates frequently.
Through all of this I am consistently reminded of the love and support that surrounds me. I am so grateful for the generosity of every one.